When my son was eight years old he joined the swim team. For two hours a day, five days a week, he splashed around the pool mastering the Australian Crawl and the Butterfly. He also developed a head of hair that resembled straw. Chlorine was the cause, and his hair recovered when swim season was over.
But for kids who suffer from an incredibly rare, genetic disorder, the solution isn’t so easy. The disease is called (I kid you not) uncombable hair syndrome (UHS).
UHS is so rare that there are only 100 cases recorded worldwide.
The untamed mane becomes apparent in childhood (usually between ages 3 months and 12 years) and typically subsides when puberty hits. But during those formative years, hair turns silvery or straw blonde and becomes increasingly coarse and difficult to tame. Upon inspection under a microscope, the wild hairs appear triangular or kidney-shaped, which causes the fright-wig effect.
Most children with UHS are otherwise healthy, but there are extremely rare cases where it accompanies other rare diseases, such as ectodermal dysplasias, Bork syndrome, Angel-shaped phalangoepiphyseal dysplasia, and ectodermal dysplasias, as well as bone abnormalities, especially of the fingers and toes, and ocular issues such as retinal dysplasia, pigmentary dystrophy, and juvenile cataracts.
In recent months mainstream news outlets and tabloids picked up the hair-raising story, reporting on cases in Derby, England and Smithfield, North Carolina. Fortunately, in these cases, the children do not have other medical issues. The tots are precociously cute with their Albert Einstein ‘dos, but their parents seem to be at a loss on how to tame the unruly locks. Since the hair is extraordinarily brittle, extreme care must be used and even simple brushing can become an ordeal. (No wonder the condition is also aptly called “spun glass hair syndrome”.)
Although there is no cure for UHS, most of these rare haired kids grow out of it as they get older. Until then, they may take a little solace in being very special. After all, there are only 100 kids in the world to have the best excuse ever to not comb their hair.
Find out more about this and other rare conditions at the NIH website.
